I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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In January of 2013, Lindsey and Josh Belt’s 5 year-old son
Joel was diagnosed with a severe lung disease called idiopathic
pulmonary hypertension (PH).Since Joel's diagnosis, the
Belts have been on a mission to spread the message of HOPE! In 2013
& 2014, they hosted Color PHor A Cure 5K to raise
awareness for pediatric PH research.The passionate desire
to spread hope and raise awareness for PH also led the couple to
createThe
Anchored In Hope Shop.Learn more about pulmonary
hypertension at phaware365.global. Never miss
an episode with the phaware® podcast
app. Follow us @phaware on facebook, twitter, instragram, youtube
& linkedin #phaware

Josh:
Joshua Belt from Jennings, Louisiana and my wife Lindsey Belt.
2013, our son was just having some complications breathing and we
thought it was asthma. Over the course of a couple months we tried
different things to try to fix it. It wasn't helping. Then we went
and saw our pediatrician one day when Joel was doing pretty bad and
he said, "Something's wrong with your son's heart, you need to go
get an electrocardiogram." We went off to a bigger hospital, they
did an electrocardiogram and came in and told us our son had
cardiac heart failure and they weren't exactly sure what it was.
That night they actually had an ER doctor that actually new of PH
and came in and said, "Hey, I'm pretty sure I think this is what it
is. We don't know why he has it, but we think your son has
pulmonary hypertension." We got life-flighted a day later to a
bigger hospital, which later confirmed that he did have pulmonary
hypertension.

Lindsey:
He was newly diagnosed. You want to help, you want to fix your son,
you want to do something, and so got him the best doctor and
medication. You can only do so much. We just felt like we need to
give back, we need to let people know we need to do something. One
night just sitting down we said, "Let's do a 5K, we can do this,
let's do a color run." It just went from there. Our community got
involved and it just picked up and was huge.

Josh:
I think when we heard how little there was for pediatrics, we just
felt like we can't just sit back and do nothing. We've got to do
something. Literally just a couple phone calls to some good friends
and said, "How many of you would be interested in helping us put
together a fundraiser?" We had overwhelming support and they said,
"Let's do it," so we said, "Let's go." The rest is history from
there, so it took off. Six months into the treatment of his PH,
doctors told us he had a year left to live, just pretty much said,
"Let's just try to give him the best quality of life as we possibly
could." One of the big transitions was actually trying to find even
another doctor that could help us out and maybe even give us even a
little bit more hope. That was a big transition, we went to another
hospital, found a different doctor that really helped us there.
Then of course, through that, we just had a lot of ups and downs,
even with his health.

Lindsey:
He was not doing well. We had heard about this thing called a Potts
shunt. It was done less than ten in the United States for
pediatrics and for PH. Our doctor got a lot of opinions said,
"Now's the time." We went to another hospital that we didn't even
know anything of, but came through this surgery and he is doing
incredible, so much better. He's not in heart failure anymore. He
couldn't run before, he couldn't play like he wanted; now he can.
We've been through a lot of ups and downs. We're on more of the
upside.

Josh:
Three line changes. There's a lot of different things there.

Lindsey:
He's strong and he's a fighter for sure.

Josh:
He's in a really good place right now. I don't really understand
how anybody could go through this journey without some system of
people that surround you that can encourage you. For both of us,
Lindsey's an encouragement to me and I try to be that to her, but
what do you do when you're both down? I think just surrounding
yourself. We've just found some people, our church family is one of
that, even our own city is even a part of that, and then of course
close friends and family that just know when we're walking through
some rough times, what to say. Sometimes not even what they say,
just the fact of just physical presence and just being there for us
has been astronomical for us to be able to walk through some of the
roughest times of our life. When those days get rough, we have
people close enough to us that know, "Hey, they need us," and so
they're there in a heartbeat. I don't know how you do that without
having some hope from people that can give you some hope when days
are rough. When you hear the statistics of a child that has gone
undetected or has had a wrong diagnosis for so many years, and then
you see what that does in a child, and the life expectancy that's
shortened because they were misdiagnosed for so long ... Of course
as someone who wants to extend a kid's life as much as possible, or
an adult, or whoever has PH, I think when you realize, "Hey if we
can get this out there, and people can become aware of it," that
gives them a better fighting chance then if we can have early
detection, there's maybe some things that they wouldn't have to go
through. You're going to do everything you possibly can, and then
of course to have a son who's gone through that, and we don't know
how long he had it, but to know if we could have caught it earlier
what would have happened. I think we tried to do everything we can
to raise as much awareness as we possibly can for other people to
detect it early and give them the best fighting chance they
possibly can have.

Lindsey:
Also, it'd be great to ... When you come across so many nurses,
"I've never heard of this before," or even some doctors were so
blessed that this one ICU doctor knew what it was, and when you
find out how rare it really was ... To have more medical
professionals knowing about the disease, especially going into an
ER with your child and you know more than them. It puts you in an
awkward role. Hearing parents’ stories of misdiagnosis and stuff,
it's just heartbreaking. I just want as many people to know about
it as possible.

Josh:
I think oftentimes the diagnosis too, can be debilitating. Even
communicating a message of hope to people is not only just for the
people who don't know that they have it, but for those who do have
it. I think to be an encouragement to the PH population and to let
them know, "Hey, we're fighting through this with you. We're
standing with you as well." I think you often see the negative side
of PH often, and so I think we always want to be one that comes on
the other side and gives the encouragement and says, "I think you
can keep fighting." If our family can show strength and
encouragement and that can encourage another family wherever they
are in the journey, then it's totally worth it. I'm Josh ...

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About the Podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday.
Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because early diagnosis and treatment can mean the difference between life and death.
Topics range from the importance of early diagnosis and global PH awareness, to the impact of clinical trials to how patient support and advocacy are paramount to battling this disease.
Learn more about PH at www.phaware.global